The Hon Scott Morrison MP: Open letter on people living with autism, and request to meet

Subject: Open letter on people living with autism, and request to meet

Your website shows that with new responsibilities in Social Security you have turned your attention to “our welfare system” and “our safety net”. Autism Aspergers Advocacy Australia (A4) asks to meet you to discuss the serious issues relating to welfare and supports for people living with autism spectrum disorder (ASD).

Apparently, whatever “our safety net” for people with disability is supposed to be, it isn't working since Australia has the worst poverty of people with disability in the OECD (see here). Note that the DSP is not a safety net for people living with severe or profound disability; these people need further support some of which may come in future from the NDIS.

Already, federal Government is reneging on its commitment to fund NDIS places above those it predicted in the South Australian NDIS trial (see here) – despite extensive warning that the Government's predictions were too conservative. Reneging on the commitment means that the NDIS is not “our safety net”.

The NDIA's first ever Annual Report acknowledged that the NDIS will not meet the needs of people with disability. The NDIA found quickly that it could not provide sufficient (there was initial over-reliance on) “formal supports”. The NDIA quickly cut supports/funds for individuals and reverted to an “increasing emphasis on informal supports”. As usual, Government significantly underestimated the contribution of informal care … and immediately reverted to the old situation (which the Productivity Commission described as largely dysfunctional).

So “informal supports” (families and partners) remain the real safety net for many people with severe or profound disability. They provide massive amounts of support at little or not cost to government and at considerable personal expense.

Since you raise the issue, we will be very interested to see you deliver on “[ensuring] the integrity, dignity and sustainability of our safety net”, particularly “the integrity, dignity and sustainability” of the informal carers part of that safety net. As well as the NDIS “increasing [its] emphasis on informal supports", Government should overtly appreciate and respect informal supports.

You write:

… But the best social service we can afford any Australian to help them deal with the costs of living, is a job. Getting as many Australians as are able off welfare and into work will be one of my core goals.

Government policies are more about denying people living with disability and who are unemployed access to welfare. There is little or no discernible policy aimed at or likely to get unemployed people living with disability into jobs.

The Government's own record for employing people with a disability in the Public Service is abysmal, and getting worse. The average has dropped to under 4% and the NDIA, a Government showcase for disability employment, only achieved a disappointing 11% employees with disability. Australia needs better leadership in disability employment.

Frankly, Government had failed with its approach to getting people with autism into work: the ABS estimates 3,100 Australians with autism were unemployed in 2009 and 5,100 in 2012 (65% increase). Government policy has not created jobs for people with autism. Yours is not the first government to talk about getting people off DSP … expecting they will be forced into work to survive. The reality is that existing systems that are meant to help people living with disability into employment are often dysfunctional (see here, for example). Governments see payments like DSP and tax as dual disincentives yet people with disability, some of the lowest paid of all employees, and others living with disability experience an effective marginal tax rate of 50% (see here), among the highest rate in the country.

Nor are we convinced that people with intellectual disability (and/or autism) having unfair pay (as is the Government's intent, see here) is much incentive to work.

Rather than wage war on unemployed people living with disability, we ask that you first create jobs for these people.

When you get a person with disability into a job they will transition off welfare and income support automatically.

Respectfully, we suggest that your priorities are the wrong way around: put job creation first.

We are interested to know where you will get advice on creating jobs for people with ASD; we hope that you get good advice.

We recognise that you are new to the Social Security Ministry and you may not have developed yet a full understanding of the disability sector. Unfortunately, your Government's recent funding cuts in the disability sector reduce your access to a full range of policy suggestions and advice.

A4 is especially concerned with the nation's abysmal record in employment of people with ASD. The Australian Bureau of Statistics (ABS) reports:

As with restrictions in education, autism also correlates with restrictions in participating in the labour force. In 2012, the labour force participation rate for people with autism was 42%. This compares with 53% labour force participation rate for people with disabilities and 83% for people without disabilities. (link here)

Success in employment improves with success in education so it is no surprise that people with ASD experience very high unemployment (67% in 2012) following their especially poor outcomes in education. People right across the autism spectrum fare badly through their whole education and the ABS reports the consequence as follows:

Data from the SDAC suggests the difficulties experienced in gaining an education continue after school. Of people with autism who had finished school, 81% had not completed a post-school qualification. This was well above the rate for both the rest of the population with disability and people with no disability (see here).

People with ASD will do badly in education while governments (both state and federal) refuse to address foundation issues that are specific to people with ASD; particularly the intensive ASD-specific early intervention needed to prepare children with ASD for their education. Currently, the NDIA refuses to recognise evidence and expert advice that shows conclusively children with ASD need intensive ASD-specific early intervention (see links here and here) if they are to have a reasonable chance of success in education.

Successful education for people with ASD increases their employment prospects. People with ASD need access to early intervention and education that is effective for them. What will you do to improve education outcomes for people with ASD?

Politicians see unemployed people, including many people living with disability, as welfare parasites … as “leaners”. Government leads the media in publicly denigrating people living with disability, including people providing round-the-clock informal care many of whom work harder than most paid employees, calling them “leaners”, bludgers and rorters. Australia's politicians encourage disrespect for the substantial contributions and savings that informal carers provide through unpaid support for people with severe disability, especial intellectual and/or cognitive disability.

The Government took any dignity from informal carers when it described them as “leaners”. The Government should recognise and appreciate overtly the contribution of informal carers … and chastise the media for calling them bludgers and rorters.

Looking after a child with ASD has a major impact on families. A recent study found that having a child with ASD in a family decreases family income on average by over $34,000 per year. With over 115,000 Australians with ASD (see below), the financial impact on a few Australian households in actual dollars exceeds $3.8 billion per year.

People with severe or profound ASD often need 24/7 supervision. Many families have to provide this support for their adult child. The replacement cost, that is what it would cost the community to provide equivalent support, is between $250,000 and $500,000 per year for each adult who needs this support, depending on how replacement cost is calculated. Most families provide this support for free.

Government could respect these efforts: it could formalise these contributions and including them in its GDP measures.

You should also know that the number of people diagnosed with ASD is growing significantly. This is a worldwide phenomenon that has been going on for decades (see here and here).

The number of people with ASD surprised the NDIA. The latest NDIS quarterly report says that 27% of NDIS participants listed autism as their primary disability. The ABS reports:

The 2012 SDAC showed an estimated 115,400 Australians (0.5%) had autism. This was an 79% increase on the 64,400 people estimated to have the condition in 2009. (see here).

The ABS's previous reports says …

The 2009 SDAC showed an estimated 64,600 Australians had autism. This is an increase of 34,200 from the 2003 SDAC, or more than double the prevalence identified in 2003. (see here)

These reports of massively increasing ASD diagnoses are consistent with rapid growth in the number children who receive Carer Allowance (child) for their formally diagnosed Autistic and Asperger's Disorder … see here.

There are sections of the Government that simple deny this growth is happening. For example: “The [Health] Department is not aware of any evidence of any major shifts in prevalence of autism in Australia.” (see here or here) – this is “denial” because most people expect the Health Department is “aware” of any such serious health-related matter.

Officials in the Department of Social Security told previous Ministers that increasing diagnoses of ASD are probably due to greater awareness and increased diagnosis of milder cases … or possibly that people with other disability are now being diagnosed with ASD instead. To our knowledge, the reason for these claims is that officials refuse to believe any such increase is possible … no matter what evidence they are given.

Their guess is not consistent with ABS reports on data collected in 2012 that says:

in 2009, “Of people with autism, 74% reported having a profound or severe core activity limitation” (see here).

In 2012

People with autism often have difficulties in doing a number of different daily activities. Of people with autism, 73% reported having a profound or severe core activity limitation (that is, they need help or supervision with at least one of the following three activities – mobility, communication or self-care). (see here).

So the number of people with ASD grew 79% from 2009 to 2012 (see above) but the proportion of people with severe or profound disability was much the same … so the increase was not due to “milder cases”. There are similar increases in the number of children deemed serious enough to need Carer Allowance (child). There is very little prospect that such a substantial number of people with severe disability were not previously noticed.

The ABS also says people are not now being diagnosed with ASD instead of or as well as some other disability.

It is unlikely however, that people [were previously] being diagnosed with other conditions instead of autism as there is no correlating [decrease] in other conditions in the SDAC data that would suggest alternative diagnoses (e.g. other developmental disorders, mental retardation/intellectual disability) in these late teenage years. (see here).

Rapid growth in severe and profound ASD has serious implications for people living with ASD, Government and the community.

Given the considerable cost of disability in the federal budget, Government should consider whether strategic/targeted spending on disability research to understand the sector better would produce efficiencies.

Government departments avoid responsibility for ASD. For example, the Health Department wrote (see here or here):

Autism is generally considered as a pervasive developmental disability and as such is the remit of the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA).

The Department of Social Security (formerly FaHCSIA) expects “disability” means permanent impairment, so it regards any treatment with prospects for significant remediation as a Health responsibility. So DSS regards best practice early intervention or treatment for challenging behaviour for ASD as the “remit” of Health, not a responsibility of DSS.

Repeated reviews of autism research have established the solid evidence-base for early intervention for ASD … but Governments in Australia avoid investing properly in effective early intervention. The Helping Children with Autism (HCWA) package funds at best 5% of best practice early intervention for ASD. HCWA's replacement, the NDIS, does little better; the NDIA simply ignores the science (see here).

People with ASD have particularly poor education outcomes. Education outcomes improve when early intervention properly prepares children with ASD for education. Currently, evidence-based early intervention for ASD is largely inaccessible: few professionals know what it is and families cannot buy it. Paragraph 3 in Article 23 of the United Nations Convention on the Rights of the Child (CRoC) says that "the state" is ultimately responsible for ensuring every child has a right to "education, training, health care services, rehabilitation services [and] preparation for employment" ... and this happens. Specifically, in relation to children with a disability, the CRoC says ...

... assistance ... shall be provided free of charge ... and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development ...

In addition, many students with ASD, especially those who did not receive effective early intervention for their ASD and who cannot access essential clinical support, develop challenging behaviour in school. The lack of essential behaviour services and supports severely impacts on their education.

Australia signed this treaty but refuses to meet its obligations under international law to children with ASD. Neither Health nor DSS/FaHCSIA takes responsibility for treatment and rehabilitation for children with ASD, people with ASD miss out on essential services and sub-optimal treatment delivers extremely expensive outcomes. Cost analyses find that properly funding early intervention for ASD saves significantly in the long-run.

The Australian Government's refusal/failure to invest reasonably in early intervention for ASD and treatment of challenging behaviour, particularly in education, is illegal (in international law) and fiscally irresponsible.

Bureaucrats have created an “interesting” service model for early intervention for ASD. Families of children with ASD can get a small amount of funding from HCWA or the NDIS but cannot access appropriate expertise for their child's ASD. We are aware of a family who used their funding in the only way they could, a speech therapist doing a stuttering program with the child. The program is deemed a total success since the child, who has ASD (but didn't stuttering), received an early intervention service and did not stutter at all after the program finished.

Effective early intervention and behaviour support services for ASD are subject to the usual pressures of supply and demand. Since Government does not fund appropriate early intervention for ASD and few families can afford themselves to pay for treatment (that is not covered by private health insurance in USA – see here – but not in Australia), there is limited service. Limited supply means higher cost.

Australia has no university that trains people as Board Certified Behaviour Analysts, a relevant internationally recognised certification. New Zealand has two Universities that provide the training (see here).

Allied health graduates in Australia are not trained to deliver best practice early intervention for ASD. It takes more than one or two lectures that mention ASD in a three or four year degree to teach graduates to deliver intensive ASD-specific early intervention with adequate treatment fidelity. Their teachers/lecturers do not have practical experience in best practice service delivery so they don't know what it is let alone how to teach best practice to others.

There is no point training graduates unless there are jobs for them and funding for their work.

Schools and disability service providers for adults say they cannot meet properly the needs of people with ASD because they do not have and cannot access appropriate behaviour services and supports. Instead, schools get staff trained in martial arts (see here) and people with ASD are physically and chemically restrained (see here and here).

Australia needs its Government to take a proactive approach to behaviour services and supports.

The material presented above may not have the slick presentation of funded advocates, lobbyist and peak bodies. That is because an unfunded peak body prepared it.

The Government recently defunded disability peak bodies leaving more than 50% of NDIS recipients, who are among our most vulnerable citizens, and their informal carers without recognised systemic advocacy (funding for disability peak bodies was cut and what remained went to disabled people's organisations (DPOs) that do not represent people living with severe or profound intellectual or cognitive disability).

No Commonwealth Government has ever funded a peak body for Autism/ASD despite the number of people affected. We can only interpret this negatively.

We believe there are serious policy issues affecting people living with ASD. We hope you will agree to meet and discuss them.